Cincinnati Walks for Kids

On Saturday, October 20, our Cincinnati, Ohio EDS Support Group team will be joining thousands of patients, families and supporters of Cincinnati Children’s at Cincinnati Walks for Kids. Our goal is to raise funds to help Cincinnati Children’s bring hope and healing to children and their families. Funds raised by the Cincinnati Zebras will benefit the Human Genetics Department and their effort to help many people with Ehlers-Danlos Syndrome. We welcome anyone on our team that is ready to help the herd!

Click here for more information.

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    • -I am an EDEser.. as BG knows. The problem with icesnaring core stability, is that our muscles have to work harder to start with and therefore as has been explained theirin lies the problem, combined with the hormonal influencing factors which is specific to females, to an extent makes the martial arts aspect of the video somewhat sensationalist to me. The finger bracing for me is a no no as I have the thin and easily injured skin of a typical edeser and even within a normal supports need sheepskin liners to prevent injury. ALong with extreme hypermobility, my joints are able to move within a support to the extent that wrist supports have been bent – and yes they have a rigid metal flat rod inserted within them, specialist eds physio suggested that they could in fact do more harm than good as the desire of the hypermobile joint to keep moving even within the supports renders them too inactive within the support and leaves the muscles wasting and the joints which are supposed to be supported even more prone to dislocation. I think finger braces are more popular in the USA. My child who has inherited my condition thought it was normal to be in constant pain, it is not just the dislocations that are painful, sleeping, in itself can be painful. My daughter dreams pain! Without harping on, it is difficult to express that this is a disabling and chronic condition. I can only thank BG for her continued efforts to educate. I don’t feel as though I have expressed myself adequately here but am BG knows what I mean. Just meant to write to support rather than rant. Hey ho- its one of those EDS days which sucks, particularly as I have just been to the dentist and experienced again lack of efficacy of local anasthetic, in my mouth only to have a completely numb left arm!! Dentist himself was gobsmacked – the joys of altered collagen.I will mail you BG – I have been lost in myself. xoxoxox

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